I NEED TO VENT

[cin68]

Hello everyone I need to vent.  There is no where else I can do this.  My husband kind of understands, my co-workers just don't get it.

I do not understand this disease, as much as I have researched it and talked to the doctor...I DON'T GET IT!!!

I have no new lesions on my brain, but I feel worse.  What are considered flare ups?  What I do not understand is if there is no active lesions, why do I always feel bad.  ie:  dizzy, fatiqued, arms and legs numb and or so heavy I can't use them.
I know I have damaged nerves, but when will I ever feel like I am in remission?  I had one good day Saturday and it wasn't really that good, just better than the rest.
I am sitting at work trying so hard not to cry out of frustration.  I do not understand. My house has gone to crap because I do not have the energy to clean anything after work.  My husband does everything now and it is not fair.  
Please somebody make me understand what is happening.  Will I ever feel decent again?
I was given the Medrol pack, but I am so scared to take it because I have an ulcer.

I am sorry I needed to vent.

[cin68]

I think I know what is going on.  It is not a UTI, feels like one, but this happened before my hysterectomy.  When I would stand up it felt like everything was falling out of my...well you know.  Come to find out my bladder had dropped and it was close to falling out.  I had it tacked up during my hysterectomy.  I think it has dropped again.  Oh the joys of being a woman.

I need to do lunch Ren!!!
I am thinking a steak from Longhorn will make things bearable.

Cin

[rendean]

Hi Cin,
Sorry you are feeling so cra ppy . Yes , the heat is unbearable here. I think the UTI is putting you into a flare or pseudo-exacerbation. Get meds for that UTI asap so that you can feel better.

Never be embarrassed that you vented , especially since you've only been dx'd a month ago. The forum is for supporting those who have needs because of their dx or because of limboland.

I hope you feel better soon.
Ren

[cin68]

I know there is and I would love some websites.  That is so sweet.

Thank you so much
Cin

[essdipity]

There is no reason to pay $2000! Very good things are available for much much less. I think you can get a good set of stuff for less than $150. If you need web sites, let us know.

Shop around!

ess

[cin68]

I called the company and they turned me down.  They gave me the name of some other companies that carries them for me to call and buy from them.

I have another problem, I am getting a UTI.  Last time I had one I was on an airplane flying over Greenland.  Bad timing!

Cin

[RedFlame]

Please don't beat yourself up over this!  You have every right to your feelings---this is tough stuff you are going through.  

I was just looking at different personal cooling products, there are several different options and prices.  I would submit the info.  all they can say is no.

take care,  lois

[cin68]

I am certain I am in a pseudo-exacerbation.  It is so hot here.  Getting up to 104 degrees.
My doctor gave me a prescription for cooling equipment, but I have not sent in the paper work yet.  my bad!!  They are wanting to know how much money we make together which it exceeds the amount to qualify for the equipment.  So I am not sure if I should even submit it.  I found out from my neighbor that if I bought that equipment it will cost around $2,000.00.  I do not have that kind of money.
I guess I need to call my insurance company.

I am feeling better as my vitamins kick in and my body temp is cooled down.
I feel stupid now for venting so much.

Thank you,
Cin

[RedFlame]

I don't blame you one bit for being angry.  You have every right to vent, sometimes you just have to, it's better that you vent and not keep it inside.  I think it is terribly difficult when you feel so alone and don't have someone there who really knows what you are going through.  It's a naked disease isn't it.  

I don't understand why the doctors get so caught up in the lesions, their size and if they are active.  I know they need objective data, but the clinical should be enough I think.  

I think you need to take what the doctor gave you.  It may help to calm the nerve ending down.  I didn't know it had a negative effect on the stomach.  

Is it possible you are in a pseudo-exacerbation?  It's been hot here in Michigan and I have started to really feel it even up here.  I can't even imagine what Georgia would be like.

I say let your husband work.  Is there someone else in your family that can help?

I am sorry that you are having such a rough time.

[cin68]

Hello Sarah,
That is my favorite name, that was my Grandmothers name and I miss her dearly.

I was diagnosed last month.  I think I am still going through the emotions of actually having MS.  I thought I was done and ready to move on, but it seems I am not.
I started feeling alittle better after taking all my vitamins, but then I went out for lunch and it is so freaking hot here, that it just made me turn to jello.

Thank you for the compliment, I really needed that.  Nobody believes I am 42 and I am ok with that.  I take after my mother, that woman never ages.  We think it is the Cherokee Indian heritage.

I am starting to settle down now.

Thank you!

[Sparkysarah]

Hiya

No need to apologise for having a vent...we all do from time to time so you are in good company. From what I understand, MS is unpredictable and this is one of the most frustrating things about it. I am only recenlty dx'd and after all the initial early questions that most people seem to go through I have reached a plateau of acceptance that no-one can give me all the answers I need or want. However I have good days and not such good days when some of the scary questions pop back into my head.

This site has an excellent health page section (yellow button on top right) and you will find some info on flares/relapses. I think there is a question about pseudo relapses, exacerbations and remission..although it may not be called that..but I remember reading it a while ago.

My consultant told me that the number of lesions does not necessarily indicate the severity or progression of our illness. He said some people may show few lesions but appear to have more debilitating symptoms while others may have many lesions but not such bad neurological symptoms.

There is no set pattern and for each individual, MS manifests itself uniquely. I can hear that you were almost wishing for that extra half a lesion as this may help you get the dx....but looking at it from a different persepctive there is still hope that you do not have MS adn that there could be another reason for your symptoms..

(My only thought was....I am not sure what half a lesion is....they are surely either large or small..so feel that this could require further clarification?)

I am just passing on what I was told and I have a feeling that some people may not agree with this...but I have faith in my consultant who is one of the leading neuro research consultants in south west England, UK!

So who are you feeling angry with? I am guessing probably whoever gets in your path right now and I am wondering if you have thought of finding someone to talk to aside from the family. I am a great believer in talking/counselling as it helps us to put our feelings in perspective and understand our emotions. Sometimes people may need anti-depressants..but I would suggest the talking route first...but you have to want to do this and feel comfortable with talking about feelings.

So what about the house....do you feel frustrated that it is a mess or guilty because your husband is doing his bit to try and help? Be kind to yourself and sometimes we just have to prioritise what is important. If your hubbie can help then let him as he may be feeling there is not much else he can do to help make things better for you. It sounds to me as if you are just struggling with trying to keep life the same when you are obviously very tired and everything feels hard work. Give yourself permission to put your feet up and rest when you get back from work..even if it means watching your husband vacuum the floor.

Anyhow enough from me.....just had a look at your profile and you look amazing for 42! Hope your spirits lift soon.

Love Sarah :) x

[cin68]

Terri, I am a little depressed, but I am more frustrated.

As far as medication, I take Pristiq, Baclofen, Klonzpin, Amitriptyline,Protonix, Vitamin D, Calcium, B complex and L-Carnitine.  I think that is it.  Oh and Loratab for leg pain.

I have 8-10 lesions on my brain, none on my spine.

I am just tired of not having a good day and without a symptom.  I know the heat here in Georgia does not help.
I just needed to vent.

Thanks,
Cin

[tjj3761]

Hi,

I am so sorry you are feeling bad and frustrated.  We all know what you are feeling.  You are not alone.  It is hard when symptoms come and go, some are there just all the time, and family etc. really cannot understand what we are feeling.

I do not know what medications you are on, but it sounds like you may be having a little bit of depression along with your symptoms, which is also a symptom.

My neurologist started me on Cymbalta a couple of months ago for depression and the neuropathic pain, which has helped me tremendously with the depression.  I was crying all the time, especially when I went to the neuro.  This has helped my stress over my symptoms as well.

As far as the lesions, sometimes the lesions are so small that the MRI cannot even detect them, so you can have all these symptoms in a (relapse) without anything showing up.  Others on the forum have told me this and I have read documentation of this.

I am still in limboland and all my past MRIs were still negative, so I am proof of this.

I hope you feel better soon and keep your chin up....  We are all here to help each other!

terri